Just Around the Next Bend

As Steve mentioned a few weeks ago, we packed up the gear and the kids and headed off to the mountains of Southwest Virginia for some much needed back-to-nature time. No cell phones, no computers, no television or Red Box. A chance to detox from the connections that keep us firmly rooted in our busy lives. And also the opportunity to remember that there is a great, big, beautiful world out there and the best entertainment is often the sharing of stories with those with whom we share it.

This was our second foray into the wild with diabetes and to be honest we felt like pros. Meals were planned to the nth detail, the food pre-measured, pre-packaged and pre-labeled, and in some cases even pre-cooked. The load divvied up amongst us. Supplies checked and re-checked. Our plan for managing all things diabetes researched, discussed and settled. All that was left was the leaving.

In terms of blood sugar control, we opted to try something new: dose 100% for the food Lia ate, and use negative temp basals to reflect the increase in activity. This turned out to be a better plan than last year’s and easier to manage. The first half-day, we only put the temp on for four hours and then forgot to renew it, so she battled some lows later in the day. For the rest of our trip, we put on temps for twelve hours before we left for the day and this worked out perfectly for the most part:

By the Numbers (Data from Diasend)

Average Blood Sugars While on Trail: 153
BGs within range: 67%
BGs above range: 16%
BGs below range: 5%
Average daily basal insulin: 8.2 U (a full 2.3 units less than at home)
Average daily bolus insulin: 11.5 U
Average BG correction: 8%

The Hike

We hiked a total of 22 miles: 8 miles the first day to the top of Mount Rogers; 8 miles the second day to the Scales; and 7 miles the third day back to our car (two miles on VA 603).  Both girls did a great job keeping up and staying in high spirits, even when feet and backs hurt from the rocky terrain and from the climbs and descents.

On the first day, Lia hiked all day with her pants on backwards and didn’t even notice until lunch. She also fell over once when having to get over a fallen tree and needed help getting up from her overturned turtle position. Our hike was mostly uphill, and rocky only in places. The night was cold but not unbearable and it took us longer to get up and going on the second day than on the first. We lost time and had to adjust our route by cutting across the park on a horse trail, which in hindsight was a bad idea.

Horse trails, designed for horses, are filled with large loose rocks that are difficult to walk on. The horse trail was four miles long and muddy. At one point, Steve was out front and saw a copperhead snake. He turned around just in time to see Lia nearly step on it! Their quick reaction saved her from a snakebite and a disastrous end to our trip

(and possibly an upcoming plot line for a novel). We were all shaken so much after this that we just wanted to get to our destination and take a load off. The four miles felt like eight and Steve’s near-constant assurances that Scales was “just around the bend,” made Krista and I want to scream.

Change in Plans

We love Southwest Virginia. The beautiful vistas we saw during our three days were some of the most breathtaking views we’ve seen as a family. We saw our favorite friends, the feral ponies of the park. At Scales we encountered 50-60 heads of long-horned cattle, and continued to hear their lowing long into the night when a mama and her young were separated at dusk. Unfortunately, on the second day, our memory card malfunctioned and all the pictures from the first two days were mistakenly erased! We did manage to take a few on the last day.

On our last morning, we awoke to frost and a temperature of 25 degrees! Before the girls woke, Steve and I decided not to spend our final night at the campground as originally planned, but to head to West Jefferson, NC for a night at a hotel.  We ate breakfast and everyone was ready in record time. On our way down the mountain, we encountered a young man who was through-hiking the Appalachian Trail with his beautiful black German shepherd, as well as several other

campers who were short-term hikers like us. The last two miles on the road were brutal. We were once again subject to Steve’s continued assurances that the end was “just around the bend.” We were happy to finally see a sign designating the Grindstone Campground.

For all the preparation and work that we put into going on our trip, nothing compares to going to the great outdoors. It sounds like a cliché, but the clean air of the countryside, the reduction of noise and light pollution, allowed us to see things we would ordinarily miss. We noticed each other, our idiosyncrasies and habits, manner of speaking, and things we say. We listen.

And yes, diabetes, our unwanted companion, is always along for the ride. But the planning, preparation and organizing we do in advance allow us to put diabetes second, and Lia and Krista time first.

To say that we enjoyed our trip is an understatement. For three days the girls didn’t bicker, they rarely complained, and we, the parents, did not need to scold. We were surely tired when it was over, but this is the one time a year that we truly reconnect, without electronic intrusions of any kind. We are connected through our disconnectedness. We live simply and purely for these days, and we are better for it. We feel confident that we can plan for even longer trips, even if diabetes has to come along for the ride. It is Lia’s favorite activity that we do as a family and this year it has made me think of the old Steve Winwood song. It is true that life goes on too fast with these trips we hope to slow it down.

“We’ll be back in the high life again
All the doors I closed one time will open up again
We’ll be back in the high life again
All the eyes that watched us once will smile and take us in
And we’ll drink and dance with one hand free
And have the world so easily
And oh we’ll be a sight to see
Back in the high life again”

Metaphorically, that is.

 

For those interested in our supply lists and menus, here they are:

Supplies

  • Glucose meter w/ test strips, lancet device, extra lancets
  • 2 spare infusion sets 2 syringes
  • 2 vials of 50ct test strips 1 vial of insulin
  • spare meter extra batteries for meter and pump
  • glucagon kit spare battery cap, spare cartridge cap
  • Emergency info, copy health insurance card, and prescriptions
  • glucose tabs

The Menu

  • Dinner on Friday:  Fried chicken, potato chips
  • Saturday
  • Breakfast: Whole Wheat Bagels with cream cheese (with chives, bacon, and sundried tomatoes)
  • Lunch: Veggie Burgers, dried apples
  • Dinner: Gnocchi with sage butter, bacon, and sundried tomatoes
  • Sunday
  • Breakfast: Apple Almond Couscous
  • Lunch: Ollalie Wrap (spinach and whole-wheat tortillas, cream cheese, roasted pepper pesto, and Israeli couscous, with bacon)
  • Dinner:  Manly Man Orzo
  • Monday
  • Breakfast: Strawberry Almond Couscous
  • Lunch: Esmeralda wrap (spinach and whole wheat tortillas with cream cheese, avocado, sundried tomatoes and bacon)

Snacks

The Kitchen

  • 2 stoves
  • 2 pots with lids (1 small, 1 large)
  • 1 serving/stirring spoon
  • 4 sporks
  • 4 bowls
  • 4 cups
  • 1 cutting board
  • ½ sponge
  • camp dish soap
  • 4 small cloth placemats
  • 1 wiping cloth (for drying dishes)

 

Come What Come May

Any parent of a child with type 1 diabetes knows the importance of living in the present. To live any other way is to focus too much on those things that lie beyond our control. Better treatments. Soaring costs. A cure. But what about that other member of the family, the sibling?

For Krista, who’s smack dab in the midst of her teen years, awareness of Lia’s diabetes isn’t enough to keep her up nights with worry, or preoccupied with how to pay for health care, or the whereabouts and funding of research. What she observes and retains is much more immediate: frequent finger pricks, food scales and carb counting, painful repetitive procedures that appear, rightly so, to get in the way of the normal, untroubled life every teenager (and everyone else for that matter) most yearn.

So what happens when Krista gets sick, or more precisely when the symptoms of her illness mock those of what Lia experienced just before her diagnosis?

Worry, that’s what.

Worry about what might be, not what is.

“Come what come may,” said Macbeth to himself after meeting the witches, those secretariats of blind ambition, oracles foretelling the future. “Time and the hour runs through the roughest day.”

I thought of this simple yet legendary line recently when Krista experienced one such medical crisis. She’d been complaining of dehydration and of frequent trips to the bathroom and fearing an infection, or worse, had been taken to see the doctor. They tested her urine for a disorder and found nothing unusual, but a trace amount of ketones. She was sent home and we were told to monitor the situation. Nothing was said about diabetes, her blood glucose level was not checked, there was no hasty rush to the ER. But that didn’t matter. Much like the throne to Macbeth by those witches, the idea had been sufficiently sown: What if?

Later that day we did check her blood and when she wasn’t feeling better the day after that we checked it again. Both times we found it normal. So it was not—or is not yet—diabetes, but the whole thing raised the question: yes, precisely, what if?

What if diabetes struck again?

There are two answers of course to that question. There is the parental answer: We know what diabetes is and we know how to treat it. We’ll deal with it. If ever there was a motto for the parent of a child with type 1 it is “Come what come may.” If it happens, it happens. We’ll manage.

Then there is the child’s answer, which is not an answer at all but more questions: How? Why? What now?

To be sure there are answers to these, just as there were answers when we learned of Lia’s diabetes two years ago. But answers take time to arrive and telling a young person the secret to a happy life is learning to endure is like telling an ambitious but dithering brave warrior of a prophecy he would be king. The reality takes some getting used to. But as Shakespeare understood, even the worst of days come to an end.

Unless, of course, you’re Macbeth.

 

 * * * * * *

A Special Announcement

In honor of my wife and daughters and the pursuit of a healthy lifestyle by women everywhere, we are pleased to announce that beginning this week, some excerpts of the best and more memorable posts from our family’s journey of living with diabetes will appear on Lifescript.com, one of the most dedicated and respected women’s health portals on the internet.

Franca and I are honored to have this opportunity to spread awareness of Type 1 Diabetes and share with others the challenges, the small and large victories that parents, caregivers and people with diabetes demonstrate everyday to live life to fullest.

Click here to check out WOE at Lifescript


(Closure)

The world lost another human icon not long ago. It was in September of last year and most people, including me, didn’t even hear about it. In fact, I didn’t even know he was still alive–it had been that long since I’d thought about him, over forty years to be precise.

Wait, that’s not entirely true. I did speak of him back in early March when I was prompted by a class of seventh graders to share an embarrassing moment growing up. But often when we speak of the past we do so without regard for the present. The most precious of events are frozen in time, locked in a kind of memory vault. Preserved. Guarded. Untouchable. To hold them any other way only reminds us that time is always in motion, bringing us each one day closer to our own (unheralded) mortality. But I’m getting ahead of myself.

I met John Siemer only once. It was in the late 1960s, or early 70s, I was seven or eight, perhaps…I hardly even remember anything of the occasion other than the few seconds I’m about to share. But I knew him well nonetheless. As Engineer John of the Cartoon Express, WKJG Channel 33 of Fort Wayne, Indiana, he’d come into our home five days a week via a grainy color television set and my younger sister and I were held spellbound.

TV was different back then. It was fresh and clean and safe, mostly naive in its portrayal of family values (at least in hindsight. Today’s shows seems to swing the other way) and what Engineer John did for the local market–for kids anyway–was deliver that goodness first thing in the morning. But even more  special than watching the show from the living room floor was being in the studio in person, something my parents surprised my sister and I with shortly before the show ended.

There is not much that remember of that day–that’s the other thing about memories, they’re often just snippets–but I do remember during the show Engineer John came walking over in his overalls, train engineer cap and red kerchief and began asking each one of the kids in the audience what we wanted to be when we grew up. To my elementary-age self this was not just a question, but something way more monumental. A question so gravely important, it would set whatever cosmic, unnameable things into motion, that my word would then cast to stone, making them permanent, unalterable. My answer would define me.

I wrung my hands together and began to think. Fortunately, I was seated near the back row next to my sister, so I had time to prepare. But Engineer John was moving  through the audience very quickly, kids rattling off their answer into the microphone with little or no deliberation. Ha. Did they not know that the wrong word spoken at this moment would be catastrophic? I studied my lap and tried to focus, but nothing would come to mind. I was drawing a complete blank. I couldn’t think of one job, much less MY one job. Astronaut tried to sneak it’s way in but I stopped it as it seemed like that was what every boy was saying on account of the recent moon landing. I started to panic.

When Engineer John finally came to me, I looked into his broad smiling face and I looked at the mic. I  fumbled for a word, any word. Fireman, I said.

Fireman? What was I thinking? My best friend’s dad was a fireman, but other than the fact that he drove a purple El Camino I knew nothing about him. I felt relieved, but not in a good way. What had I just done?

I didn’t have time to reflect on the possible consequences as in the very next moment something even worse was about to happen, something only a little boy and older brother would find embarrassing. Engineer John had moved on and was addressing my sister. And what would you like to be when you grow up? he asked.

She looked at him, all fiery-red hair and freckles. Tarzan, she answered.

Everyone laughed and they looked up the bleachers at us and I felt the earth spinning, it was the future realigning itself to this sudden and drastic change.

Tarzan? John Siemer repeated.

My sister nodded, That’s right.

Well, all right, he said and moved on and I did what any self-respecting older brother could do. I hung my head.

* * *

For forty-some years that was all there was to this story. Just a single moment of innocence and simultaneous embarrassment. This week there was written a second chapter.

We were having friends over for Sunday lunch, after an afternoon of biking. I’ve mentioned them before on this blog. Their daughter has type 1 and the mother and I became acquainted through Without Envy before they even moved here. We all became close friends once they arrived. Seated around the table we were talking about Fort Wayne, where the father, like me, had once lived, and for some reason I mentioned the Engineer John show.

That’s my brother-in-law’s father, he said.

Wait? What?

Engineer John, he was my brother-in-law’s dad. He died recently.

I looked at him and for a moment I felt like a kid again, sitting with royalty (don’t let that go to your head, A).

I guess I was wrong. Memories do sometimes evolve. And, thankfully, so too do  little boys’ (and girls’) wishes.

RIP, Engineer John (Siemer).

The Story That Keeps On Giving

It has been a busy past couple of months for us with teaching, writing and a little travel to New England for the Thanksgiving holiday. But I took some time over the summer to recap for a local magazine just what our first year with diabetes was like and I’d like to share it with you here. For many of you, this will be nothing new, both in terms of what you read as well as what you and your special little loved ones have endured. To be certain, it’s a story I love to share and with nearly another year having passed since Lia was diagnosed, the fear, the hope, and the love with which we greet every day has not changed. We’re still learning to live without envy.

Too Little, Too Soon

In spite of her diabetes, for Lia, life is pretty simple. She loves to take walks up the road, fish off a dock, and she’ll still will occasionally host in her room a miniature tea party for two. If a person is kind to her, she’s kind to them back. She never says, “but it’s complicated”.

Riva Greenberg wrote an interesting piece earlier this summer (and which appeared last week at A Sweet Life) on a disappointing experience she had using a continuous glucose monitor, and it reminded me of our own brief and unhappy history with one of these hi-tech devices.

About eight months after Lia was diagnosed with T1 and only six weeks after going on the Animas Ping, our CDE suggested we give a “blind” CGMS a go. Franca and I agreed, after all, what in the world did we know about diabetes management. We were still wrestling with its very presence, and on top of that (disqualifier), we thought it’d be good information to have in helping us configure the settings and maximize the power of the pump. Unfortunately, it appears, heightened emotion and naivete are two sure signs that other than the experience of trying something new, very little good will come of the extra effort. Now we know.

For starters, the device was just too big. Lia hated it and its presence, in her mind, was inescapable. She could not forget it was there and so she scratched and scratched at the area, clawing her nails over and around the little contraption until she had managed to unplug, as it were, the business end of the monitor, rendering lost the last day or two of information, a fact anyone had failed to realize until the nurse at the endocrinologist’s office saw the missing days in the data, or rather failed to see the data. In our mind, even one second spent in discomfort or otherwise hampered by diabetes is one second too much. Strike One.

Though our endo’s office had assisted us in initially programming the pump’s settings — one carb ratio, one insulin sensitivity factor, three basal rates for a 24 hr. period — it became pretty much up to us to figure out how to fine tune them. Ignoring (for now) the gross dereliction of duty I now believe that was, setting up a pump is no simple small task, no matter how long you’ve had diabetes. Six weeks later we were still chasing numbers all over the place, correcting blood sugars day and night. The fact of the matter was, it was just too soon for us to be test driving the newest technology. Going to a pump from shots is not the same as say, switching from a stick to an automatic. We were still trying to figure out the complexities we already had. Were we ready to try a CGM? No way. Strike two.

And finally was the data itself. As this was a blind CGMS, the readings were not provided to us in real time. It wasn’t until two weeks later at our endo’s office we were finally able to see them. Without going back and comparing our logbook to the data the CGM spat out, there was no way to know if the thing was even calibrated correctly. For sixty bucks, I honestly expected more than that. End of story. Strike three.

Like Riva, Franca and I would really love to have a CGM in our corner. It’s something that should be in every parent’s corner. Taking care our children is hard enough without using all available resources. Unfortunately, we’re not looking to sign one up anytime soon, and it wouldn’t matter if we were, Lia’s experience turned her off the idea anyway. In her mind the rules just aren’t that complicated. Three strikes, you’re out is plenty enough.

D-Blog Week: Admiring Our Differences

“Tomorrow is always fresh with no mistakes in it.” Anne of Green Gables.

 

When I first read about the Diabetes Blog Week, I thought it just wasn’t the thing for me. In theory it sounded great. An opportunity to engage other writers for a week on a similar topic, sharing in different perspectives, stories, and experiences. But I worried about the time and creative commitment, about the topics and whether or not I had anything worthy to contribute. But mostly I worried — and this will sound strange — of opening myself fully to this community.

I know, I write a blog. I put myself out there every time I post something. You can’t get much more open than that. But as I’ve written before, like many of you, I don’t write it for others… well maybe I do some occasionally now, but it didn’t start that way. It began as a way for me to personally come to terms with my daughter’s diagnosis. The fears, the raw emotion, the anxieties that greeted us every day, those were my audience. My goal then and still today is to root those devils out, expose them in their deepest, darkest hiding places and in making them public learn to live in plain sight of them.

For me, to achieve that must take, in part, a better understanding of myself through the words that I write. But I am reminded, often in my writing, that I am not the one with diabetes, Lia is, and to be honest gaining an understanding of what that must be like for her takes so much more and is so much bigger than just sitting down to a keyboard or a computer screen. It takes walking in her shoes, something I and everyone else is incapable of doing; so there are times when I finish with what I have to say and I realize I have no better understanding for what I think about it than when I began. They’re just words on the page, my blabbering on about this or that, knowing full well that buried amongst the squiggles and straight lines is the deeply unsatisfying truth that this is not nor has it ever been my burden to carry.

I wish that it was. Everyday, I wish that it was.

Bad things happen to good people. We know that. It’s been that way forever. The hardest thing for a parent to accept is not that it happened but that we cannot take it away from our children. We can read of how others have learned to deal with diabetes, how young people have grown up and learned to live full, long lives; how they traveled, married, had children of their own. We can read books, watch documentaries, participate in other ways of communicating the same message: life with diabetes is hard, but not impossible.

We can do these things and are lives are better for it, but that shared experience only partially eases our worry, because there are other stories as well, some that aren’t being told because no one could stand up to the telling of them, and that’s all good and well. But it is in these moments of gloomy despair, when we feel most vulnerable to the frustration, confusion and uncertainty of fighting this disease, that we need a helping hand; it’s then that we realize, ultimately, that we just simply cannot do this alone.

With that in mind — and finally to theme of this blog day (sometimes discovering what you think takes a strangely circuitous route) — I’d like to share that my inspiration of late comes from someone who doesn’t even write a blog. To my knowledge this parent of a CWD doesn’t write at all. They do read plenty of d-blogs, however, (in fact that is how we first met) and most importantly, they are as involved in their own child’s health and well-being as are Franca and I. To our benefit, they have been with diabetes a good bit longer than we have and are willing to share their insight, knowledge and personal experience with what it has been like for them rooting out their own marauding demons.

It’s not just us, but Lia, too, who has benefited. She had the chance a couple of months ago to spend some time with their child. This little girl, we’ll call her R, is the same age, in the same grade, and has the same good-natured qualities as Lia. The two spent the day together and it seemed on the surface like any normal play date between kids. They ran around, they jumped on the trampoline, and other than testing together, seemed not to pay their diabetes any attention. But that evening after R went home, Franca and I went to bed forever grateful for having found someone else with whom Lia could relate to on this important level. Unbeknownst to us, however, Lia had been soaking up much more than a new friendship. The next morning when she came downstairs to where we were sitting, she announced to us her BG, how many carbs she was eating for breakfast and how much insulin she had bolused.

This was surprising in that it was the first time she had ever taken such charge of her diabetes and in all honestly it was a degree of intellectual involvement that Franca and I both knew was important for Lia to reach, but after only six months on the pump and just over a year of having diabetes, was something that neither of us were ready to ask of her  ourselves. We — I, especially — was still stuck in the theory that diabetes might be her burden, but it was mine to carry. Lia, it turns out, disagreed and she didn’t need one of us to ask this ownership of her, she only needed to spend time with a little friend, who showed that life with diabetes can not only be normal but also extraordinarily special and confidence-building, and that is a lesson, my friends, that I would not trade the world for.

 

Dinner and a Poem

It was a custom of ours for some time in our home, after we were through with our dinner, for one of us to grab Bartlett’s Poems for Occasions off the shelf and partnering with someone else at the table fan the pages until they would holler, Stop. Whichever poem the one fanning the pages landed on was theirs to read aloud. Then it moved on to the next person and so on and so forth until we’d all taken a turn. Outside the obvious pleasures and enlightenments of reading wonderful poetry, this practice for our family was akin to using a divining rod to find water. There was always the fated chance the someone would stop on a poem that revealed some precise and meaningful thing about ourselves.

It was a silly little game, but we all liked it, even when the supernatural was not tempted and the poems made little personal sense to the reader or anyone else, which was often. Lia, for instance, seemed to have the knack for always stopping on Robert Frost’s, Whose Woods These Are I Think I Know, (which may have made perfect sense looking back). She liked the poem so much, she had the page dog-eared and went ahead and read it anyway, whether she was commanded to stop or not. To her, life can be both mythical and in our power to control it, such was her dinner and a poem.

Often, people took more than one turn in the hopes of fate giving them a better verse, something lovelier or simply more direct. Disappointment, even in something as fickle as chance, is a difficult thing to accept. More than once, we had to just close the book, leave serendipity for another day, and get on with cleaning up the table. But, as I said, we all liked the game and out of it grew some appreciation in all of us for poetry, family, and tradition.

I don’t write poetry — well, I don’t write poetry well, that is. I don’t think so anyway. Other than one recent occasion (in case you missed it, here is the link to the very special, Six Until Me), I haven’t tried my hand at it in many, many years. But I love poetry and when I write prose I write with the same love and gratitude for the way words can be carved and shaped into an evocative, aesthetic rhythm. Poetry is to storytelling, what music is to sound.

Unfortunately, we haven’t been cracking Bartlett’s or any other poetry book after dinner lately. There is no good reason why. Energy. Focus. Desire. So much has been on our minds. What time has there been for daydreaming poets, for lyrics, or irony, when there are boluses and blood checks and other worries on which to attend?

The truth is there is no excuse. This occasion means too much to us as a family. So in honor of returning this tradition to our table, I offer this, the very first poem I turned to this morning (honestly). It’s by Henry David Thoreau. The title is My life has been the poem I would have writ:

My life has been the poem I would have writ,
But I could not both live and utter it.

Now just to show how well this “diving rod” doesn’t work, the second one fate picked for me was To My Dear and Loving Husband, by Anne Bradstreet.

Good thing we aren’t relying on this to find water.

When We Grow Up

Once, last week, on a day I had work that would take me away from the house, I drove Lia to the school where Franca teaches so that she could stay with her mother. It was summer vacation still and Lia was happy to be going to the school because only the teachers would be there and she would pretty much have the run of the place. She carried with her her diabetes supplies as well as a backpack of artsy activities suited to occupy her, though most of her time would be spent either playing on the computer or drawing on the white board at the head of the class.

I think there is something strangely alluring to a child and an empty school building. It reminds me of when I was her age and visiting my father’s uncle who drove a school bus in some far out country school district in northern Ohio. I can still remember the thrill of him taking us for a Sunday afternoon joy ride in the enormously long (back then) yellow bus.

For the drive over we took what we call The Big White Truck, which for Lia is always a treat, but not because it is big, it isn’t, but because she gets to sit in the front seat. This puts us on even par, at least conversationally speaking. Just two dudes — a new favored term she has recently picked up — ridin’ in a truck, yappin ‘bout the day.

I was feeling nostalgic for other reasons as well. This year Lia will be in the fourth grade and as such will be moving to another building. This is good news for us as a family because that means that Franca and the girls will all be at the same campus, which brings us both great assurance from a diabetes care standpoint — this school has no nurses, mom and dad are the nurses — as well solves for us a number of logistical problems, primarily, for me anyway, avoidance of cutting my workday short to attend the dreaded carpool.

But a new campus also implies something lost: The early mornings of waiting with Lia in the car at the library, talking and listening to music until the school doors opened, then holding hands as we walked down the street and past the flag pole and up to the school’s front steps; later in the day, sunny afternoons waiting outside on the sidewalk to pick her up, sharing a wave as she found me in the crowd of other parents, listening as she told me about her day as we walked back to the car; the occasional side-trek to the park or the library, which, sadly in hindsight, never happened often enough. To make matters worse, in the fourth grade building there are fifth graders to serve as reminder that just around the bend are the sixth and seventh and eighth graders, who are just a short skip and a jump from the high school, of which I can’t possibly consider for fear of discovering that a blink is truly all that it takes and then you are there, years ahead of this one certain moment.

Lia is old enough to know this too but to a child time passing is different. It is something of which to look forward to, to dream upon and make wishes — who you might become, where you might live, what work you might do — and yet…

As we head to the school that day in The Big White Truck, her mood suggests also a special sadness. Whether she is old enough to appreciate it or not is another matter, but I sense this tinge of regret in her that all children eventually come to discover, that life does indeed hurry by.

I will miss our walks, she says, but her grin betrays her. She has said this for my benefit and I love her even more for it. It is one of those cherished moments you’d like to freeze in time, the beloved gift of a glimpse into someone’s true heart.

Our wistful moment is short lived, as most are, and we have moved on further down the road. Our discussion has moved on too and we are talking about barns and how it would be nice to have one on a farm, with cows and chickens and tractors. Lia turns to me and says, Daddy?

Yes, sweetheart.

When we grow up, she begins.

I look at her suddenly with puzzled amusement, and she stops. I regret my intrusion at once, the suggestion is just too farfetched, though also extremely appealing. But I am too late with remorse. Lia has already realized her verbal mistake. It shows on her face in embarrassment and I feel for her disenchantment. It is one of adulthood we all share eventually, there is no turning back.

And so she starts over with the proper beginning, and we continue down this path, where my daughter, and all of my children, in fact, keep proving to be miles ahead of me.

Noodling

In some parts they call it catting. In others, it’s hogging or stumping or dogging. If it is trout, not catfish, you are after, it is considered art, not a sport, and known to practitioners as tickling. However, those of, shall we say, a bit more extreme-minded personality, prefer something a bit ornerier as their prey. Plus, if you are of the necessary mindset and in the mood for entertainment, there is even a DVD series called Girls Gone Grabblin’ for your catfistin’ viewing pleasure. Universally though the term for it is noodling. It involves wading into shallow water and shoving your hand beneath the surface and plunging it into a dark underwater hole where if you’re lucky and all goes well it will be swallowed by some giant catfish. Irregardless, the name you give it, it is by the very unambiguous definition of the act, hands on, and as such a fitting analogy to other such menacing matters.

We returned to the lake over the Fourth of July weekend to share in a longer visit with our friends from Connecticut and though none of us noodled or grabbled or otherwise did anything risk-worthy of a video, we did come across two young men hand-fishing for catfish along the shoreline. My good friend, Mike, and I were standing on his dock fishing when they asked did we mind if they noodled past.

At the time I had no idea what they were even talking about and went on fishing, but watched after the two boys with interest as they went about probing beneath the surface with their hands and a stick searching for probable nests. The way they felt unseen before them reminded me of searching the nightstand for my glasses in the dark, minus of course the caution (read: fear) of being latched on to by something fierce and toothy. I found also a poetic semblance in their ambitious blind hunt to the treatment of Lia’s diabetes.

Such cause for waxing lyrically may have been due to my state of mind, which after the unceremonious case of forgetting the dog, was convinced that the rest of the summer would be going much in the way of her blood sugars: A plethora of mind-numbing highs, mixed with a few startling lows, some brief, unpredictable moments of rest and contentment. For both Franca and I it had begun to feel as if much of our days and nights would be spent on the periphery of living, bound down by the sole occupation of chasing phantoms. It was a sentiment we felt sure would be backed up with scientific proof during Lia’s next endocrinologist visit, which occurred the week following our lake trip.

Fortunately our fears, like the worry of those catfish hunters who sometimes poke something they wished they had not, were not realized. The two boys got their fish, a thirty-five pound channel cat, lurking beneath a boat ramp a few houses down from our friend’s. And despite the struggles we’ve had with adapting to pump therapy, Lia’s A1c came down to 7.8.

Our relief, of course, was immense, as was that of those two fishermen when the great water cat came clean of its guarded obscurity with no injury to either of them. And after the elation settled and those wonders we’d brought to the surface and spoke of and then turned loose and after the doorway in which we’d come to know them had gently closed and we were left standing alone untroubled by the effort of our accomplishment, at peace even perhaps, we thanked ourselves for the warriors in all of us who never stop searching, probing, and reaching into the next hole.

It is the experience of our hands that we learn from, which fingers to prick, which dark holes to avoid. We are being taught to take it one day at a time, one shoreline after another, celebrating the rewards of everyone’s hard work and  mulling over the things that went wrong. But such discovery has a hard-edged strangeness about it, an awareness that leaves us weary. Yes, with it comes empowerment, but there is always the troubling forethought of what might linger in the unknown. For tomorrow is another day and fear too can be motivating. Parents of children with chronic sickness know this maybe better than most. As Franca put it to me as we were driving away from the doctor’s office with our good news: Every time I leave there, I can’t help but feel like crying.

Your Brain on Diabetes

Other than early on when we had this beast by the tail and no idea what we were doing, there have been only a handful of occasions where we were   truly and very stressed for Lia’s immediate safety. Not that there’s not enough room for that kind of intensity (or insanity) in any routine that includes getting up in the middle of the night every night or delaying bedtime by fifteen minutes or more in order to check glucose levels just one more time, there is, and plenty. But since her diagnosis, outside of one sickness-induced emergency room visit, most of our distress over the last six months is of the complicated, long-standing nature that wide swings in blood sugar are reported of causing later in life.

Worry is worry, however, and the distraction to everything else in the world is the same no matter if it’s set in the future or comes from the past or the present. That was our thinking last weekend anyway when Lia suffered a low of the sort that jerked us square back to the moment and reminded us that this beast still has teeth and can bite.

It was Saturday, close to noon, and for breakfast Lia had eaten cereal with milk. Milk, depending on the type, sometimes has the tendency to raise her blood sugar hours later, and in fact when we tested her blood before a mid-morning snack it was above three hundred. Lia suggested the culprit was probably the cow’s milk because the variety she’d had wasn’t the 2% Jersey milk we’d recently switched her to and which seemed to keep her glucose in check, but the heavier Holstein whole milk. But because people, especially parents, are capable of believing whatever it is they want to believe, even when the truth is staring them right there in the face, both Franca and I chalked up her high to unknown factors and gave her a bolus to correct it. An hour later Lia was watching television when she told her mother she was feeling shaky, her preferred way of announcing to us: something’s just not right here.

Franca had tested her blood thirty minutes earlier and the mid-morning bolus we’d given her seemed to be working as she was now at the high end of her target range. But with Lia feeling strange she tested it again and the bottom had dropped out of it and Lia was suddenly looking and acting in a way she hadn’t behaved before with any other low. Her eyelids drooped, her speech was sluggish, she had trouble focusing. So she gave her a glucose tab and waited for it to take effect but grew more concerned when Lia complained that her heart was racing and she gave her another. When after another few minutes had passed and there was little improvement in how she felt, Lia started to cry and everyone’s confidence was then shaken.

I think you should go get Daddy, Lia said.

Franca offered her a juice box then and went and called me from the bottom of the stairs.

I came down and found Lia sitting in the chair, her eyes were closed, she looked to be sleeping. What’s wrong? I asked and sat down beside her.

Franca went through her symptoms as Lia looked languidly at me, then her eyes closed and her head lolled backwards. Honey, wake up. I patted her cheek. Can you hear me?

We were calm, but inside Franca and I were both on the verge of panic, each of us wondering was this what it was like when someone loses consciousness from hypoglycemia. Should we get the cake frosting? Was our next step the glucagon shot?

After a little more coaxing we got her to sit up and she drank some of the juice and we held her and waited for all those carbs she had eaten to do their thing. It seemed a long time in the way a long time can feel to the parent of a suffering child, but it wasn’t. Twenty minutes after her low was first reported Lia was feeling much better and back in her target range.

We spent the next few hours watching for the rebound high but it never came, proving perhaps that Franca had done well in treating the low so aggressively; and we kicked ourselves around the curb for not listening to Lia and going against our practice of not double dosing for the milk in the first place, a strange reaction when all you were trying to do was to make things right. But, like Elphaba learns, even good deeds can end in disaster.

The next day Lia’s numbers were perfect until the late afternoon when they shot back up over three hundred. We were visiting friends at their lake house, all of us: the kids, the dog, diabetes. The day prior was still fresh in our minds of course and Franca and I were both sporting that damned if you do, damned if you don’t attitude, so we dosed her for the high, because the devil you know is better than the devil you don’t know, and the devil right then was high blood sugar.

The bolus worked as it was supposed to, but the damage to our attention was already done. Still frazzled from the day before. Frustrated by the wildly swinging ups and downs. Exhausted from middle of the night blood tests. Sick of holding this damn beast at bay. Like the proverbial eggs in the frying pan, by the time we left that afternoon for the two hour drive home we felt as if our brains were fried.

We hadn’t been on the road long when Franca’s phone rang.

I wonder what we forgot, she said wearily and only half-jokingly as she took the phone from her purse and answered it.

We were all thinking what it could be, silently running through an inventory of what things we had brought when Franca said out loud: The dog.

Great, I thought, knowing the ridicule to follow. Fried and now scrambled.